Design of the Advance Directives Cohort: a study of end-of-life decision-making focusing on Advance Directives

<p>Abstract</p> <p>Background</p> <p>ADs are documents in which one can state one's preferences concerning end-of-life care, aimed at making someone's wishes known in situations where he/she is not able to do so in another manner. There is still a lot unclear about ADs. We designed a study aimed at investigating the whole process from the formulating of an AD to its actual use at the end of life.</p> <p>Methods/Design</p> <p>The study has mixed methods: it's longitudinal, consisting of a quantitative cohort-study which provides a framework for predominantly qualitative sub-studies. The members of the cohort are persons owning an AD, recruited through two Dutch associations who provide the most common standard ADs in the Netherlands, the NVVE (Right to Die-NL), of which 5561 members participate, and the NPV (Dutch Patient Organisation), of which 1263 members participate. Both groups were compared to a sample of the Dutch general public. NVVE-respondents are more often single, higher educated and non-religious, while amongst NPV-respondents there are more Protestants compared to the Dutch public. They are sent a questionnaire every 1,5 year with a follow-up of at least 7,5 years. The response rate after the second round was 88% respectively 90% for the NVVE and NPV. Participants were asked if we were allowed to approach close-ones after their possible death in the future. In this way we can get insight in the actual use of ADs at the end of life, also by comparing our data to that from the Longitudinal Aging Study Amsterdam, whose respondents generally do not have an AD.</p> <p>Discussion</p> <p>The cohort is representative for people with an AD as is required to study the main research questions. The longitudinal nature of the study as well as the use of qualitative methods makes it has a broad scope, focusing on the whole course of decision-making involving ADs. It is possible to compare the end of life between patients with and without an AD with the use of data from another cohort.</p

Social, behavioral, and contextual influences on cognitive function and decline over the life course.

Maintaining cognitive function is a prerequisite for living autonomously in older age, and it is highly desirable to postpone cognitive decline for as long as possible. In order to understand how cognitive function is shaped across the life course, it is necessary to focus on life course influences on cognitive aging. The chapter gives a selective review of current knowledge on life course influences on later-life cognitive function with a particular focus on the most recent developments in research on cognitive reserve between 2008 and 2013. First, the theoretical framework of cognitive reserve and life course epidemiology is introduced. Then, an overview is given on life course influences that have been shown to shape later cognitive function, with a focus on important factors of social and behavioral nature, such as education, work environment, and social and physical activities. New research on contextual factors, such as neighborhood socioeconomic status, schooling laws and retirement policies is then presented. The chapter ends with prospects for further research